Chapter Three : Breakdown, How I Saved My Legs
Everyone has their own personal MS story and
I won't belabour mine. Rather, once I get the “breakdown” story
out of the way, my emphasis will be on my MISTAKES, what I should have or could
have done otherwise now that I am aware of the blood/brain fluids circulation
mechanism at work in MS. (And also I’ll give myself credit for what I did right.)
I have ordered my medical records from the HMO which was
treating me to compare to the journals I wrote at the time these
events unfolded. And I’ve suddenly realized that I probably, inadvertently,
saved my legs.
Spring 1980 I was in rehearsal for the April ballet performances. Tuesday April
15 I visited the HMO Gynecologist and was apparently feeling well. Shortly
thereafter the skin on the right side of my neck began to burn. On Tuesday April
22 I reported to another HMO Doctor that I had fallen ill with a sore throat 3
days previous. (A particularly nasty virus had been circulating in the ballet
company over the past month). The Doctor told me I had a virus which would go away. His notes report that I was hyperventilating and that I left “reassured”.
Minor Mistake: Thursday April 24 I underwent a pelvic sonogram ordered by the gynecologist because of persistent lower right quadrant pains. I had the impression that the technician saw something, but the Doctor signaled to her to say nothing. I did not learn of the results until 1996 after moving to France where the problem was treated correctly. (That is to say the HMO didn’t inform me there might be a problem and didn’t treat it at all. That is another story, though the chronic irritation and pain certainly contributed to my poor health over the following 16 years.) I don’t remember being particularly ill that day. I suspect the Sonogram worsened my health situation since I am exceptionally sensitive to the slightest disturbance.
I began to experience weakness, numbness and tingling in the right arm, neck and
shoulder. An irritating pins and needles sensation developed as though the
blood circulation had been cut off. The right side of my torso felt cold and clammy, spongy and waterlogged. Then I began to drop things from my right hand. I
didn’t stop to rest, we were rehearsing and a good trooper didn’t quit. I became
feverish and terribly weak. During the Saturday morning pre-performance class it became clear I had lost control of my right arm. I could raise it overhead but once there I didn’t know where it was or what my fingers were doing. I was told they waved about oddly. Worse, I had begun to experience coordination problems in my legs.
Nonetheless I performed tolerably well on Saturday April 26. My last performance April 27 was a near disaster. In one day the paralysis had seriously weakened my legs. It was a Sunday matinee and my husband couldn’t fetch me so I took the bus home. A kind gentleman helped me off the bus because I couldn’t steady myself with my right arm.
The performance season over, I thought I could relax and recover especially since I had recovered from the sore throat virus. Though my symptoms seemed bizarre, I more or less ignored them and kept going. I watched in amazement as my right arm deteriorated as though it were a foreign object attached to my body. If I extended it before me and closed my eyes I found on reopening them that the arm had moved up or down or sideways, the hand usually having dropped without my knowledge or volition. In time I couldn’t use the right hand at all, it curled up useless at my
side and was a source of acute embarrassment. I am left handed and could
continue to write, but practical tasks became impossible. And too there was
the discomfort of the nervous system run wild. My arm was all pins and
needles, the skin on my right neck burned fiercely while the right side of
my torso remained cold and clammy. Gradually the pins and needles
irritation developed in my legs. I tried my best to ignore the symptoms in
the belief they would subside once the “brain virus” had run its course. I
was run down and tired, but not so tired that I had to remain in bed all
day. I drove to a friend’s house, we laughed a bit at the anarchy which
seemed to have taken over my body.
I had scheduled a meeting for Tuesday April 29 with the residents across the
street to help them deal with the conversion of their apartments to
Condominiums. Since my successful appearance blocking 2 abusive conversions at
City Hall the year previous I was seen as an “expert” by tenants in
spite of myself. My weak dysfunctional right hand embarressed me, the sherry the
piano professor offered irritated my nerves, wrapping me even tighter in the
cold clammy shroud of my skin. This time the Conversion application was handled
according to proper legal procedures, but tenant protections at the time were
pretty thin. And while the owner had prepared his “attack” in advance with
the help of a lawyer, the tenants naturally found themselves caught short.
They didn’t know the law, what their rights were, and were faced with
having to hire their own lawyer which in the USA gets expensive. Again they
were being evicted to make way for building“renovation”. The evening of the
meeting I was shaky and wondered how I could keep going. My body had
begun to alternate between a bizarre burning in some parts, cold and spongy
in the torso, pins and needles throughout, and my walking was labored.
The day following April 30 I typed a letter for the apartment complex residents with my left hand since the right was now useless. Towards 5:30 p.m. just as I finished my task with the pleasure of a job well done, there came a knock at the door. I opened it to have a 30 day eviction notice thrust into my hand by the landlord’s son. I was
shocked, upset, “stressed” and furious. A better located apartment had been
vacated the month before and the owner’s son could have taken it rather
than evict us from ours.
However, it was in the end a godsend for me.
That evening my husband Jacques and I decided to buy a house which we
should have done years earlier before prices began to skyrocket.
We would have to delay the eviction until we could buy a house and move.
We visited a tenants rights lawyer the next day. I don’t remember being
particularly sick when we walked into Sarge Holtzman’s office on Haight
Street. It was a beautiful sunny San Francisco May day. I extended my hand
to shake his. My husband said I shouldn’t have, it was like handing someone
a dead squid. Mr. Holtzman advised us we could delay the eviction for 2 to
6 months through legal maneouvering after which the sheriff would post a
notice on the door as a prelude to the actual eviction. He suggested we
persuade the landlord to give us time to find a house in order to avoid any
further unpleasantness. In any case we could stall the eviction to give us time.
The image of the sheriff posting an eviction notice on
our door sent me into a stress attack. (In retrospect I ask myself why I
didn’t leave the problem for Jacques to solve and myself concentrate on my
recovery. But that isn’t how things worked with us. Finding a
house, ordering boxes, moving, all the endless details rose up
as unsurmountable obstacles before me given my weakened condition. Jacques seemed oblivious to what was happening to me.) The stress precipitated a crisis.
My spine in the upper back burned terribly which seemed to trigger off the
pins and needles sensation in my good left hand and elbow. That evening as
my spine and neck and legs burned painfully and I began to lose my left
hand and arm I wept. I didn’t know what was happening to me and feared the
worst. Jacques called the HMO emergency and the Doctor asked to speak with
me. I described my symptoms and he recommended I come to the emergency
room. At the hospital I was given a spinal tap which was negative. They
apparently were looking for meningitis. The Doctor sent me home after
recommending rest, vitamins, gradually increased exercise and a visit with
a Neurologist. He thought the problem would eventually go away.
I was laid low the next few days with a horrendous headache just as the
Doctor had warned. a heavy weight on the top of my skull seemed to
crush the brain tissue if I tried to rise from a horizontal position. The
symptoms in my left hand subsided. It was as though I willed the symptoms
out of my left hand into my right which by now curled up useless at my side.
Tuesday May 6 I obtained an emergency appointment with the Neurologist while he was doing his Hospital rounds. A friend drove me there, I felt and looked like death, though I believe it was more the spinal tap which had laid me low than the MS. I had already been treated by the Neurologist for migraine (or tension?) headaches. This seems an appropriate prelude, since migraines also involve brain/blood/fluid
circulation. The Doctor wrote wrote “flu like illness recently…right arm spasms…spinal tap OK…right arm…Imp: looks functional" (MY NOTE. Functional is Doctor speak for "of unknown origin")…probably anxiety, hyperventilation conversion…consider others MS, BT, et al…has appt 6 days.” (I can’t read everything he wrote) He
seemed dazzled by a pretty young female Resident who was accompanying him on
his rounds and he hardly examined me at all. He told me I was having muscle
spasms, writers cramp and needed to relax (ignoring my comment that I
wrote with my left hand.) I left discouraged and once home went straight to bed.
That same week my husband called the landlord to say I was ill, that we intended to buy a house and would leave as soon as possible. Mr. Lee agreed and Jacques delivered the rent check to the landlord who lived downstairs. The next day as I lay in a stupor another knock came at the door. I dragged myself to open it only to have another letter rudely shoved into my hand by the landlord’s son. I opened it to find my husband’s rent check and a notice that the eviction was still in effect. Furious I
raged downstairs to knock at the landlord’s door. Mr. Lee looked defensive
and a bit upset. (I had always negotiated directly with him in an amiable
way.) I asked them (Mr. Lee and his son) what they were doing, we had
agreed to leave, we would leave, we just needed more time. “I’m sick” I said “My hand doesn’t work.” The son glared at me “What’s this paralysis story you’ve made up” he sneered. I showed them my hand. They began to close the door on me when, enraged, I pushed it open with my good hand. They fell back, stunned.
“Why didn’t you take the apartment that came available last month, why not last summer when you were talking about it?”
I insisted in anger. The color left the son’s face since he realized I had
been talking to another tenant. They insisted they must go, but with less confidence
than before. I returned shaking to my apartment 2 flights up, and collapsed into
bed.That evening Jacques asked the landlord if he could send the rent check and
he agreed, thus leaving us time to move in an orderly way. However, all the stress, anxiety, and the supreme effort of leaving my bed to confront the landlord had left me totally spent.
In order to relax (per Doctor’s orders!) I decided to get a Shiatsu massage at the Kabuki Hot Springs on Friday May 9. After undressing I was led to a square blue tiled pool where the kindly Masseuse bathed me with a large, soft sponge, pouring tepid water over me from a bucket. Then she helped me into the steam machine where I was left to “cook” and relax.
Then I was led to the sauna where I lounged for about 10 minutes, luxuriating in
the wood scented dry heat. Finally, thoroughly heated and relaxed, she
treated me to a massage with her firm competent hands. The tensions of the
previous months flowed out of me. Shiatsu works down the bands of muscles
parallel to the spine which I know contain the “Bladder” meridian in Oriental medicine. I now believe this massage actually stopped the MS attack. (I’ll explain more later.) I felt transformed, so wonderful, a sense of total relief. I returned home in a cab and went to bed. Walking into my building I met one of the tenants from across the street and I told him I couldn’t help them anymore with the Condominium conversion
project, I was too sick. I had to let everything go.
Then I totally fell apart. My nervous system seemed to run wild, all the symptoms of burning, tingling, pins and needles, paralysis and shroudlike chill were in full
throttle. I couldn’t understand why I felt so much better on the one hand and so much worse on the other. It was the heat of the steam bath/sauna of course which exacerbated the symptoms of nerves exposed by the MS “attack”. Yet I now believe the massage stopped the blood reflux – hence the attack – though it would take time to become apparent.
I now know that a deep tissue massage releases toxins embedded in the muscles so that generally one feels terrible the following day. I felt terrible all week-end and on Monday May 12 I saw the Neurologist in the clinic for a scheduled appointment. I still
felt lousy, was frustrated and frightened. He dully listened to me as I described the exacerbation of my symptoms, making no move to examine me. It was obvious he took me for an hysteric. I burst into tears. “What’s this?” he sneered. I was angry. “I am sick and you are well, at least you could be more gracious about it.”
He finally rose to examine me and as he worked his attitude changed, he grew more intent. He took my reflexes, asked me to reach out my arms in various ways, to perform certain manipulations. He asked me to touch my finger to my nose and then reach his own finger which he held at arm’s length away to the side. I performed this
several times and then he asked me to repeat the procedure with my eyes closed. To my horror, I couldn’t find his finger. He examined my legs as well, asking me to balance on one leg and to walk heel to toe, among other things.
The examination complete, he told me there appeared to be some involvement with the brain and would order various diagnostic tests including a CAT brain scan and an EEG electrical brain scan. (The MRI wasn’t available at the time.)
His notes – difficult to decipher - mention my right side had been “burning”for at least 4 weeks, symptoms on my right body, neck, and arm and upper torso. 3 weeks use of
Right arm decline past few days left foot 4-5 digit spasm? Seen in Emergency Room routine lab and CSF NL seen by me a few days later. Dystrona?? Positive Right arm ..tone fluctuated. Seemed functional. Process most likely. “Tearful, frustrated”...
Dx Still could be functional but progression, including R reflexes now doubt it. Consider MS, BT, Plan CT scan in am (Normal) EEG mid week) ." (My comment - BT
must refer to brain tumour. Jeez.)
The Neurologist entry of May 14 reads “patient seems better” Cat Normal. EEG mild Right? (EEG report of May 14 “motor and sensory disorder of right body mildly abnormal, not epilectic”).
What strikes me here is that by May 14 “patient seems better” IN SPITE OF THE FACT I HAD UNDERGONE A CAT SCAN AND EEG which normally would have worsened my condition. To me this implies the Shiatsu massage really had stopped the attack. The lab tests may have delayed my recovery, but the worst was over.
Wed May 21 I visited the Neurologist again. A brief overview of his notes which are difficult to decipher.” L to R slowing tmy interpretation. Fatigue? Improved. Mild L temple pain. No new? Less ? R arm. Dx: L parietal basal ganglia lesion MS?
Parainfection? Lesion other trauma? (Lots of question marks.) Plan, use Prednisone trial (if?) problem increase, return 2 to 3 weeks. Take it easy.”
This is the first mention of Prednisone in his notes, an anti-inflammatory Cortisone which was the treatment of choice at the time. However, he didn't mention any treatment that spring. Apparently contrary to his expectations, my condition began to improve.
I next visited the Neurologist on June 10. “Better. No new ? R arm travel better.
Spooning, finger jerks? Dx. Improving?MS?parainfection. Present to visiting
professor Chris Pallis next week.”
The Neurologist told me mine was an unusual case he would like to present to a famous British Neurologist who would be giving a “master” class the following week at the HMO. Perhaps he could cast light on my problem. I agreed to come. My Doctor
was unusually civil when he made this request.
On Monday June 16 I arrived at the hospital and my Dr was pleased to see me. Dr. Pallis was gruff and arrogant. He stood at the head of a classroom of white coated
Doctors before a chalk board and asked me to sit on a small grey folding chair. He asked me to perform certain manipulations with my arms and hands after which he asked me to remove my boots to continue the examination of my legs and feet. He then drew on the board a tube like structure, making a partial “bite” in it, explaining that this was an unusual case since the lesions didn’t go all the way through as evidenced by the fact that the right leg was not affected like the right hand. (I
reflected that if they had, I would have been unable to walk. I can’t recall his exact words.) He then turned towards me and very assertively said that I would entirely recover save for some residual clumsiness in my right hand. Just as assertively I
insisted “When?”which caused the class to chuckle. “In a few months” he answered
before abruptly dismissing me.
I left somewhat offended and discouraged. On arriving at the hospital I must have been feeling reasonably well since I had taken the bus to get there. On leaving I felt much worse and as I walked home from the bus stop my legs were heavy as though I was pushing through 4 feet of water.
Translation, the encounter with Dr Pallis must have stressed me and the
blood must have been backing up into my CNS. I felt I had done my
Neurologist a favour with no real benefit to myself.
Today, 33 years later, I can see the benefit. I am proud to have been examined by a
world famous Neurologist, especially since I agree generally with his
political values (after a look at his obituary). And I’m convinced his
analysis was the right one. My Neurologist wrote that Dr. Pallis thought I
had a spinal cord lesion (which is what he must have drawn on the board.) The
HMO doctors thought it was a Left parietal white ? (somewhere else I read
brainstem). The consensus was that MS was likely, though a parainfection
process was still possible.
How is it that the “attack”didn’t “eat through” the entire spinal cord which would have left me unable to walk? My answer. The Shiatsu massage of May 9.
My notes show that when I went to the Emergency room on May 2 my upper spine burned fiercely. After the massage I felt a total relief, even though the heat triggered off symptoms for a few days. The massage must have stopped the blood reflux onto the spinal cord. By May 14, even though I had undergone a CAT scan and EEG
(which normally would have worsened my condition) I was feeling better.
On June 18 my office visit evoked a comment - virus? MS? 4 weeks return,
steroids (if worse?)
By mid June I believe my husband and I had found a house to
buy and our move in date was set for August 1. It amazes me I was able to
prospect for a house and deal with myriad details (and yes, stress) given that
my right arm was near useless. I don’t think I felt confident enough to drive, I made
appointments and then my husband and I looked at the real estate after work.
On July 15 I visited the Neurologist again. “Slowly improves, no new symptoms. ? clear, gait normal, right arm less, no drift arm. Slowly resolving right arm
sensory disturbance. Possibly MS Return 3 weeks, Avoid fatigue.”
On July 29 I visited the Gynecologist who noted that I felt generally well and
had only residual endometriosis. The Sonogram results revealed 2 “nodes” on
the lower right quadrant (1.5cm and 2.5 cm long). However he said nothing
about this, leading me to believe all was normal. I didn’t discover the "nodes"
until a French Doctor ordered a sonogram in May
1996. Early February 1997 a surgeon removed a fluid filled hydrosalpanx which
he believes had been creating a chronic infectious condition since April 1972.
In any case by 1996 it had been a source of chronic stress and pain for a good 25
years. In France a Doctor can’t hide lab results because they are the
property of the patient.
By early July 1980 I had recovered from the April-May crisis. I then made a
terrible mistake. If I had rested and done everything possible to recover my
strength and health I believe I could have avoided any further MS attacks. I’ve
been told one can have one attack and never another which seems plausible. (Dr.
Pallis appears to have been operating on this idea.) If an acute stress can force the blood back up into the central nervous system, it’s possible one may never suffer
another incident like that, hence never another attack. I should have been
told that I had suffered a potentially serious disorder and should avoid
strenuous activity for at least a year.
Early July the owner of a boutique on Polk Street said their rental would be available as of September 1 and were we interested. My husband wanted me to open a French
perfume shop and we had asked the owners to reserve the space. The decision
upon us, I had great misgivings. My husband’s uncle during our visit to France the previous spring had told him it was a terrible idea and tried to dissuade him. He said “You have a lovely young wife who is an artist and you make a good living as an engineer, why are you doing this? You are going to ruin your life.” His uncle was right. My husband wanted a business importing French products. I told him of my misgivings but he insisted on going ahead. I consulted the I Ching: The Book of Change (translated and edited by John Blofeld) which warned
"Hexagram 36: Darkening of Light, Injury."
Yes, it would be exactly that. Running a business is difficult enough, but what made the perfume business particularly dangerous for me was the TOXICITY factor. I
would be bathed in toxic fumes all day (agreeable as the scents might be) and this toxicity created a terrible stress with predictable results.
The lesson of Chapter 3 is that I inadvertently saved my legs by
getting a Shiatsu massage. I believe any deep tissue massage would have done. If I had avoided the heat of the steam bath and sauna, I could have avoided the temporary
nervous system aggravation. My Neurologist was puzzled, he was getting ready to
launch me into steroid treatment, but then the whole process stopped. No one
asked if I had done anything to arrive at this. I now believe at the first onset of MS symptoms one should get a massage. Why not? I can’t see any possible harm, and the benefits may be beyond anyone’s expectations.
Let this be a cautionary tale.
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